Thursday, March 31, 2011

Other then my post I just previously wrote I hadn't wrote anything for 3 days. Between work being really busy and then me being just a complete emotional wreck, I couldn't even bring myself to want to write anything till today. I have however been trying to keep up with everyone elses posts.

Maybe I was just hyping myself up way to much for the big 38 weeks and causing more stressed then was needed on myself, but the 38 week point of what would be my pregnancy came yesterday and it was horrible. The last two days really have sucked actually. The doctors would have never let Liam make it past 38 weeks because of the fetal surgery, which means that as of yesterday if Liam wouldn't have already DIED or been born prematurely, I would no longer be pregnant and should have a baby in arms right now. Of course that is not the case and my emotions are running wild. I can no longer say that I should be pregnant still because I now I would no longer be pregnant, now I am just someone whose baby has died and trying to somehow make sense of it all.

The last two days I felt like I was going absolutely crazy. I cried on and off the majority of both days and struggled to put on a happy face for patients at work.
A few of the crazy and random thoughts that have ran through my head are as follows:

-Why did I ever get that stupid surgery, it left me with no baby, a huge scar to remind me daily of my loss, and a fear of future pregnancies. It plain out ruined my life.
-I wish more than anything I could go back to that day and take Liam's place, he should be here, not me, the risks were supposed to be all on me.
-I should still be in San Fran right now, or with family in Minnesota, this is BS, I don't want to be here right now, I'm not supposed to be here right now.
-I am so mad at my husband right now, he acts like I just need to move on, that it has been 3 months and that there is nothing we can do and just look forward to when we can try getting pregnant again. I am sick of him making me feel like I just need to get put on depression pills to just hide my pain-he acts like I'm making too big of a deal out of this. Stop rolling your eyes at me and letting out big sighs like I'm annoying you!
-I am tired of feeling alone, I feel like there are very few people who care how I feel, sometimes I think all of you blm's really are the only ones who understand or care, and wish even family could act even a little bit like they care that my son died. Even just ask how I am doing and listen, even if you just don't really care, it would mean a lot to me!
-I wish the burial could've just happened right after the funeral, I am happy to see my baby again-even if its really just a vault but its physically as close as I can be to him again, but having to plan for it sucks- what day? well decided on Monday, May 16th, but now to figure out the rest of the details.

Many of the crazy thoughts have at least passed and just have to deal with the rest I guess.

I first off just want to thank everyone who kept pushing me to get in contact with some of the fetal surgery MOMS study moms. As I mentioned in my last post I finally got the courage to email a few of them, even though I have been so hesistant since they all still have their babies, which I feel just sets me so apart from them.
Sunday night one of the moms already had emailed me back within an hour of sending her a message. We wrote back in forth a few times and then decided it would be best to speak on the phone, so Monday I called her and we spoke for an hour and a half. I just can't even express how happy I was to actually be able to speak to someone who had also had the fetal surgery. She told me all about her experience with getting into the study, having the surgery, delivering her baby, and then also how now she is pregnant with her third child.
Talking about her being pregnant again for the third time with no future complications was really good to hear. My biggest fear is having a uterine rupture and she said that didn't even concern her at all and that her biggest fear was not having another baby with a birth defect. She informed me that her first baby, the one who she had the surgery with, ended up coming at 32 weeks, the second baby they took at 36, and the one she is pregnant with now will be taken at 36 weeks also. She said that most of the moms from the surgery have all had their next babies by 36 weeks. I was surprised to hear that they are taking the babies at 36 weeks, sounds so early, but she told me that I should talk to my doctor for my next pregnancy and probably tell them I don't want to go past 36 weeks either. When I told her they told me to never to go past 38 weeks she said 38 weeks is just way too risky since we are never allowed to go into labor. Thinking I might be having a talk with my doctor now about that.
She also told me about how she was told to wait 3 years before she got pregnant again, but said she couldn't wait and got pregnant in 2 years instead. I guess I understand the waiting that long though since she had 2 incisions, the fetal surgery and c-section one, versus my one since my c-section was done at the fetal surgery location. I had thought all of our fetal surgery incisions were done at the same location, but her's is in a completey different location than mine. I guess it just depended on the position the baby was in at the time. I am starting to think 6 months doesn't sounds too bad compared to being told 2-3 years either, but at the same time I probably wouldn't mind having to wait if Liam had survived.
We also talked about some other things pertaining to the next pregnancy as far as exercising, taking extra folic acid-which I already am doing, and just listening to my body as time draws closer to the end of the next pregnancy. Overall great conversation, I really needed to talk to someone who had been there, it put me in a great mood at least for the meantime.

Sunday, March 27, 2011

One thing that has been really hard for me this week is that it has come to that point that we need to decide what day we want to do Liam's burial on. I had wanted so badly to do it on Mothers Day but just found out the other day that burials will be done Monday through Thursdays only. This is just making me so mad, I understand they need days off also, but now I have to just pick some random day in May to do his burial on. Geez, so how to decide what day I want to have to be the day I will remember for the rest of my life; cheapest plane tickets to Minnesota, Dereck's home, least amount of time I have to take off work, best time for other family if they want to be there for it? I also need to decide what we want to put on his gravestone. There is so much I want to put on it but his name alone is going to take up most of the space. It would be nice to add a nice poem or quote or some kind of picture engraved with his name.
A few days from now marks 38 weeks, Liam's delivery, unless of course he had been born prematurely and not died, should be a happy time. It sucks to be here planning a burial instead of welcoming or already be holding my baby boy.

I also wanted to include that Dereck and I had been trying to go to Church around the time before Liam and I were going to have surgery and then also started going more after he had passed away. We have never been big Church goers but always thought we'd go more once we had children. I thought going to Church and getting closer to my faith could possibly help me in healing process. So far we have gone about 5 times since Liam has passed and each and every time I can't even make it through one service without crying the majority of the time. There are babies or small children everywhere and I just can't handle it, or maybe its just that everyone looks so happy and joyful which I am not. Thinking maybe for now I'll just continue praying at home alone.

Many of you have commented a lot on my posts about me feeling the need to find someone who has a similar story as mine. I did end up finding someone who had fetal surgery but for a different birth defect, on twins at that, and one of them died shortly after delivery. I have also decided to finally email a few of the moms that have blogged about their experiences with the fetal surgery for treating myelomeningocele like Liam had. I have been worried about asking them questions about their feelings toward having more kids since having the fetal surgery because I feel so different since my child didn't live and of course theirs did. I don't know if anyone will write me back or not but would love to know their thoughts and fears going to into another pregnancy. I only emailed the one mom who had the twins and the others that have had another child since the surgery or are pregnant now since that is my greatest concern. Hopefully someone gets back to me and if not I am glad I have the rest of you that are so awesome in always supporting me.

It's late, I'm up, and I haven't slept much in the past few days. So why I am up, apparently it seems just to upset myself. I have been trying to look under different sites in hopes of finding blogs or forums or something that could connect me to some other fetal surgery moms who have lost there babies also. As I stated in my last post I love all of the support I get from each and everyone of you blm's and also love reading your blogs-you have all become a huge part of my life. I have come to realize just how important when I go to leave town for a night and don't have internet and I find myself freaking out because I want to be able to check and see what is going on with everyone.
In my searches all I end up with as usual, is just tons of blogs from all of the moms that were involved in the MOMS study, and of course they all still have there babies. I know I am expecting too much in trying to find someone so close to my situation and am grateful to all of you who posted that you will keep an eye out for me if you see or here anything at all related and are here for me even if our situations aren't exactly the same-but really whose is exactly the same. As another blogger put it- situation is different but the pain and loss of dreams is quite similar.
Every blog I find is another family talking about the MOMS study and how it changed their babies lives and how they felt it was meant for them to be apart of the study and have the surgery, etc. Well that is exactly what we thought but we got shit on-excuse my language but that is exactly how I feel. Now don't get me wrong, I am so happy that everything turned out so great, this surgery is a huge deal in the medical world since the results have been published in the NEJM, and that many of these moms all have blogs about there wonderful experiences and how they are close to all of the other families who lives were also greatly impacted because of this surgery but gall darn it, WTF went wrong with mine.
I know I have wrote about this so many times and I am really trying hard to accept a lot of what has happened,and also not be so angry and learn to accept that no one is to blame, but I don't think I will ever understand or get over this. How can someone do so much for their unborn baby and lose them anyway- or better yet why does anybody have to lose their baby. I should still be in San Francisco or with my family in Minnesota and within a few days-unless I went into premature labor first, having Liam via scheduled c-section and soon be sharing in the joy right along with all the fetal surgery moms whose babies lives are changed because of this. This just isn't fair and I want to scream right now, but should probably just try and get to bed before I am up all night making myself more crazy than I already feel. This week is going to be HELL, I can already picture it.

Friday, March 25, 2011

Call me a pessimist or a worry wart, it is probably the truth. I was worried and stressed trying to get pregnant, then worried about my baby having cataracts and needing surgery after he was born-it runs in my family, and then felt I needed to have the prescreens done when pregnant for the fear of something wrong. Obviously I had a reason to worry when it was found out he had Spina Bifida but I tried to be optimistic for like the first time ever and then the worst happened nonetheless.
So how now do I try to want to ever be optimistic again. I think I am probably driving my Ob Dr. nuts. I have called them on an average of once a week since I have been home and also talked to my Perinatologist a few times in San Fran-it hasn't even been 3 months yet. A lot of it has to do with the fact that right after surgery I couldn't even think right to ask questions and also was so depressed from losing Liam I forgot half of what I was told. I have called my Ob Dr. 3 times this week and even went in yesterday to get looked at. I had a few hard falls hiking the other day, and then had very sharp stabbing pains through the right side of my incision area the days following. My Dr. had to inform, yet again, that my uterus is just fine and the only way I can hurt it is by getting pregnant too soon. She also said that the pain is probably caused by my bowel and other things finally falling into place and the fall just got them there sooner. Apparently in surgery things can get stuck together easily-sorry if this is TMI. Not completely understanding, but I'll take her word that I'm okay-for now. When will I just learn to settle down and just to take it day to day and nothing I can do now till I even start trying again.

Another thing that has been really on my mind is how I see so many people write on their blogs how they have found people that they can fully relate to with there baby loss situations. I am so grateful to have met so many people to share this baby loss journey with-you all mean so much to me, but sometimes wish I could find someone that has gone through more of what I have. Maybe I need to look harder but what are the chances of finding another blm who has had fetal surgery and lost there baby. I have read some blogs by other moms who had the fetal surgery for Myelomeningocele for the study, but they are all the lucky ones who still have there babies with them. I believe there were 2 moms that lost there babies quite a few weeks after having the fetal surgery and I think a few that also lost there babies that were in the postnatal group. Wish some how I could find a way to connect with them, what are the chances they would even have blogs?

Wednesday, March 23, 2011

This just made my day to wake up and see Liam's name wrote in the sand on a beach in Hawaii. I just can't get enough of seeing his name. Thank you Angel Babies; Names in the Sand from Facebook for doing that last night, you made me one happy momma today!

Monday, March 21, 2011

Ahhhh! I am so frustrated right now. When I was in the hospital after Liam had died I was told that we would not be able to receive a birth certificate because he never took a breath outside of me, even though he was technically alive outside of me for an hour and a half through CPR and being intubated. I always thought that seemed strange because you can clearly look at the timeline of when he was delivered to the time he was pronounced dead, but I figured the doctors new what they were talking about and this must just be a California law.
If you would have read a post I wrote a month ago you would have read that I was so happy to have heard that I could get a certificate of stillbirth, not a real certificate of birth but at least I would have something saying he was born. I had come to terms that he was just stillborn, but now after talking to a girl in grief group I learned that she was told she can get a birth certificate and her baby was clearly dead and delivered the next day through c-section. So frustrated now, why doesn't Liam get one.
I googled the definition of stillbirth and this is what it says- stillbirth means the fetus has died and there is no possiblity for resuscitation. How do you even consider Liam stillborn then if he was delivered and had CPR for an hour and a half, obviously they felt there was a possibility he could be resuscitated?
Not sure who I need to talk to about this but my Ob Dr.'s nurse agrees that this doesn't make any sense and that I need to talk to Vital Records. I hope I am not getting my hopes up here that I have chance at getting a birth certificate, but this would mean the world to me to have his life recognized that he really was alive, even if it was only and hour and a half. I wonder then if this all goes through would it be considered infant death then? Oh geez I can't wait till tomorrow when the Vital Records office open, I need to know now.

Sunday, March 20, 2011

It has been just under 3 months since Christmas ended and up till just now the the tree has been up and fully decorated. If you would have asked me anytime in the past few months why the tree was still up I would have told you that it reminded me of happier times from when I was still pregnant with Liam and had no intentions of taking it down till after next Christmas.
I had almost decided not to decorate the house this past Christmas because Dereck was going to be working and I had already made plans to go home that week to see family and have my baby shower. I couldn't help but want to set it up though, I just love Christmas and all I could think about is how next Christmas the baby I was carrying would be celebrating it with us. Oh and not to mention next Christmas we were finally planning on having a real tree, versus our fake one, just figured we'd wait until we had kids for that.
When we were told that we had to be in San Francisco to start the testing process for the surgery we had less then a week to get everything packed and cleaned up since we had planned on not being back home for at least 4 months. The Christmas tree we figured could just stay up and when we would come home with our bundle of joy we would take it down then.
No bundle of joy brought home, the holidays were complete chaos, and now feeling jipped for next Christmas. I would have never thought I'd get so emotional putting stuff away, but I know it was time to take the tree down.
The sun has been shining and Spring is in the air, and staring at this tree daily was not doing me any good, but its funny how everyday I'd look at it and think of you. I love you Liam

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It feels so good to get so much spring cleaning done. Also bought tons of picture frames at Michael's to put pictures of Liam in. Now I am just waiting to talk to Derecks grandma this evening, I just love her. All in all a pretty good day..

Saturday, March 19, 2011

Last night was one of those unforgettable great nights, at least that's how I feel about it. Two things happened last night that has still got me smiling and in a great mood even after the lack of sleep I had last night.

First off I got a text from a friend last night. We have never been really close and actually had met because Dereck works with her boyfriend on the slope. They have 2 little ones together and we have only really gotten together a handful of times in the past few years. I guess you could say we just don't have a lot in common. She texted me last night saying that she had really wanted to ask me something but wasn't sure how to go about it. I told her she can ask me anything and she went on to telling me that her and her boyfriend have been having a hard time coming up with finding godparents for their kids. She said that they feel there families are really unstable and most of there friends are in Wisconsin and have never even met their kids. She said mine and Derecks names have came up a couple of times and her exact words were "That we both think you are prime examples of great parents. You would do anything to make sure your children are well taken care of" and went on to say that we are the only ones they can agree on and if we would consider it.
I wanted to drive over and give her a hug right there, I have never been more touched or honored in my life. I told her I would need to talk to Dereck about it and then we could all get together and talk discuss it further. She then said she is an avid reader of my blog and that's what made her really want to ask me. I have never felt more honored in my entire life. I think I repeated that to her about 20 more times and about how much hearing that meant to me and it absolutely made my night.
I have enjoyed reading everyone's blogs and it has been great to know that I am not alone on this journey. They have helped me in so many ways and I always hoped my story could help others in a similar way. Recently though I have heard from many friends who have read/heard my story, but have never experienced this kind of loss, just how much more it has made them really love and appreciate there children.

Then my amazing friend Brooke, who has just been awesome through everything, has been telling me forever that if I ever need to talk or having a hard night just to call her and she will listen no matter the time or even just come over and sleep the on the couch so I don't have to be alone when Dereck's gone. It's been hard for me to want to just sit and talk about all this with friends because when I am with them I want to be happy and have a good time, not sit and dwell on my situation with them- I do that enough at home or with Dereck.
She invited me to dinner last night and while we were there she asked about my conversation with my Dr. the other day. I went on to explain to her everything we had discussed and my feelings toward the dreaded 6 month wait. The service at the restaurant was rather slow but it allowed me to finish my story about my conversation with the Dr. and then also told her about how honored I was to hear about the godparent topic above. I had never told Brooke this till this night that I wanted her and our friends Liz and Kevin to be godparents to Liam. I don't always feel godparents should be family, my family is my family but Brooke, Liz, and Kevin new more about Liam then anyone and they expressed many times about how they were so excited for his arrival and are still here for us through our loss.
After we left there we decided to just go back to her place and hang out. Now I am not a huge drinker, nothing really against drinking just not fond of the taste of most of it, but my friend has said how she enjoys a glass of scotch on occasion and its a great drink to just sit around and sip on and talk. I decided sure why not and 3 hours and a couple of shots worth later we were still talking. The liquor might have helped me a little in my ability to just share everything, but it felt so nice to just let it all out. We also shared some crazy other stories about our past, but what a great night and an even more terrific friend. Thanks Brooke I really needed that.

Friday, March 18, 2011

My Perinatologist that I have been waiting to hear back from called me yesterday. I have had so many questions to ask, and when he called last time to discuss the autopsy, I was at work and couldn't talk long.

I have been struggling, pretty much since the point I was in the hospital recovering from the fetal surgery/c-section with the idea of wanting to get pregnant again almost immediately. I know emotionally I am not healed but really know I will never be completely healed from losing Liam, just hopefully be a little more at peace in the months to come. Mentally still drained but physically my body is feeling pretty good except for the occasional abdominal pain-think thats just my body telling me I'm over doing it and just wish this numb squishy area above my incision would go away. In another 2 weeks I will be coming up to the 3 month mark, 3 months of life without Liam and also 3 months of my body healing from surgery. My doctor said that if I absolutely wanted/needed to get pregnant that 3 months would be the earliest but would prefer 6 months because then I would be way more emotionally and physically healed to take on a new pregnancy. Six months he said is the point when he can almost guarantee that there would be no chance of a uteral rupture which is one of my biggest fears right now. Another 3 months sounds so far away and if I get lucky and get pregnant right away that babies due date would literally be right around Liam's original due date, not that we would have ever made it there anyway. I guess really anytime in the next 3 months will be hard because if I did get pregnant in the next month then that baby would be due right around the time of Liam's one year angelversary, and I'm not sure how I'll handle that, let alone try to have a baby all around the same time. Hmmm.....

My Dr. and I discussed this for awhile and then he told me all about other moms who have had the fetal surgery and that many of them went onto have healthy children with no problems. The difference is that none of them lost there child in the fetal surgery like me. I feel that the only way for me to truly heal is to have a baby in my arms but I know the right thing is to let my body completely heal first. So to wait the 6 months and hope we don't have infertility issues again, or maybe just another month or so and try at the 4 or 5 month mark? Hmmmm...........

We then discussed a lot of other things relating to Liam's death and the autopsy and my feelings on making the right decision. I know that if we didn't have the surgery and if Liam would have still died at a later date I would've regretted not having the surgery. I will always wonder. We also talked more on the fetal surgery/c-section location on my uterus and about why it is so important for me to never go into labor with any future pregnancies. He says I shouldn't be so concerned, although he understands I have good reason, and says he has no reason to believe that my next pregnancy will not go good and I'll be blessed with a perfectly happy healthy baby. I guess all I can do is just have hope that he is right on that, but do I really have to wait another 3 months? hmmm......

Thursday, March 17, 2011

I was thinking today a lot about the person I was before and while I was pregnant compared to who I am now. It took us 2 years to get pregnant and when we finally got pregnant it was almost hard to believe. When we were trying it was so hard to want to stay happy when every month it was another disappointment; oh the chlomid didn't work, oh the IUI didn't work, oh Derecks out of town during the conceiving time- need to wait till next month, oh look my body isn't cooperating again-stupid body. We did obviously get pregnant though and all of those past worries were gone, I felt good, and the stress of trying to get pregnant had ended.
I remember that first month thinking maybe I'll be one of the lucky ones that will never get sick. Well I never really got sick, but had quite a few mornings of feeling nauseous, but that usually went away as soon as I ate something. During the 2nd through 3rd month the tiredness kicked in and I remember complaining so badly about how I hated being pregnant. I don't understand now why I was such a baby about it, I wasn't throwing up and nauseous all day, I was tired and that was about it. I am an active person, but this laying around business was getting in the way, how selfish of me.
I also had read a lot on "What to Expect When Your Expecting" and I remember reading about what they recommended you eat while being pregnant. No sushi, no deli meats, limit bad fats, limit caffeine, most of these things are things that I never really had a lot of anyway-except caffeine, I love coffee, espresso, and an occasional energy drink. Surprisingly it wasn't too hard for me to cut down to one or two cups of coffee tops in a day- I was pretty impressed with myself. For some reason though knowing I shouldn't have sushi or deli meats was making me crave like crazy a subway sandwich or a sushi roll. Same goes for having deep fried food, I was craving french fries and potato chips, actually I craved anything that came from a potato. Eventually later in pregnancy the cravings moved from potatoes to pasta and soft pretzels. I am normally a pretty healthy eater and now I rarely crave any of those things and I since have had a soft pretzel and think the one's I liked the most are horrible and don't understand how I liked them so much. Before I was pregnant I also had a huge sweet tooth, especially ice cream, but apparently Liam didn't like sweets because my horrible sugar addiction that I just couldn't kick, just vanished when I was pregnant.
By October I was starting my 4th month of pregnancy and had gotten a lot of energy back. My endurance was gone though which meant no more long hikes, but was happy I had the energy to at least lift weights and do light jogging and walking. Of course now I wasn't complaining about always be tired and having no energy but was starting to complain about how I am getting up 20 times a night to pee, and I normally get up a lot anyway but this was crazy, and also starting to have a hard time sleeping. I was never able to get comfortable and I think the knowing that I shouldn't be sleeping on back anymore was causing most of the problems.
November was about the same as October but then we get into December, moving into the 5th month. This was a very joyous yet sad, crazy month. This was the month that I felt Liam kicking. I had been waiting forever for that moment but the Dr. said it would take awhile to feel him kick since my placenta was in the front. I finally was starting to feel like, why I have I been complaining about being pregnant this is wonderful, I love knowing he's in there moving around. Of course the feelings of sadness and anger were also there trying to make sense on why baby had a severe case of Spina Bifida.
I find my self angry to think it took Liam's having Spina Bifida to open my eyes to just how much worthless complaining I had been doing and just how much love I had for him. Well I guess we all know how the story goes from there. How naive I was, complaining about such minor things and never once thinking about how at anytime I could miscarry or how I never even new of stillbirth, or be happy that my baby didn't have a fatal birth defect. I had a pretty easy pregnancy compared to many and yes, my baby did die way to early but how lucky I was for the time I had with him, I now know just how many people don't even get that.
That little guy was something special. I just can't believe in how the 6 short months I had with him I would come out a whole other person. My perspective on everything has changed, he has given me this whole new appreciation on life and love, everything that really matters.

I just read the 2nd quote on another blog which lead to me to find this first quote, both I find to be pretty powerful

When we're able/ready/willing to surrender, and stop being at war with our life...pain can transform to joy...and the relationship we have with the person we love who died nurtures us in a very real way.
andWhen we are in pain, we become self-centered and myopic. When we heal, we become more empathetic, self-less, and sympathetic to the pain and welfare of others. It is our gift to others to heal ourselves." ~ Max Strom

Monday, March 14, 2011

I was so tired earlier today, but now I can not sleep, am crying and just plain out mad. I just can't accept this Liam, I need to know WHY! Why did this happen to me, to you? What did I do wrong? I was going to be a good mom to you, I know I can sometimes have very little patience, but I was ready for your arrival. Spina Bifida or not, you are my baby and I love you, and I miss you oh so much. This just isn't fair. We should be at 36 weeks right now, so close to 38 weeks, to your arrival. I don't even know what to do with myself these days. I feel like I just need a major life change right now, not that losing you wasn't change enough, but just a change. I know your never coming back and know my life will never be the same, but I hate the way my life is right now. I am so confused, lost, angry, mad, depressed, and the list goes on. I am trying so hard to do what I can to remember and honor you, but its not enough, I want and I need more. I am still working on my team for the March for Babies Walk in remembrance for you. I have been a little poky with writing my fundraising letter to get sent out to people and finding other good ways to raise money to help other babies. Raised a good chunk already though, but hoping to raise more once I get my lazy butt in gear. Still planning on doing the Kuddle Korps volunteer program in the NICU, still scared and nervous, but know those babies need to be held and loved. I just wish it was you that I could be holding and loving. I've also been exploring schooling options, don't really have the time or money for it but I would love to be a nurse in Labor & Delivery since we had so many great nurses at UCSF, they inspired me. I am already in the medical field taking x-rays, maybe I should do ultrasound, at least then I could do ob/gyn ultrasound scans and still be in the imaging field? Or maybe I am just trying to hard to find something that can maybe fill this emptiness in my life, and my heart right now. I know none of these things will bring you back, no matter how much I do. To tell you the truth baby, I don't even think I am mentally capable of doing any of these things right now. I know I need to do something and the box of cookies I just inhaled, well I'm already regretting that one.

My ex who was in the tragic car accident passed away yesterday. I feel so bad for his family right now, especially his mother since she was the one who had to make the tough decision to take him off of life support. I had gone to the store immediately after I heard the news to get a sympathy card for his family. While looking for the perfect card I came across this one that really touched me. It was a very simple card that said
-Long before we are ready, we sadly say goodbye. But there are those in a far more beautiful place who are saying welcome home.-
Now if I would have received that card right after Liam's death I would have been angry by what was wrote since I was having a hard time dealing with the fact that I wasn't ready to say goodbye and also that home should be with me. Many of the cards I received after Liam's death were as nice as I guess a sympathy card can be but when your angry about a loss, anything relating to he's in a better place or he's home, made me even more depressed. I am still angry but defintely more at peace with the idea that he is "home" and that he was welcomed there by many loving friends and family. I am not quite sure on what to say to Mike's mom in my sympathy card to her without upsetting her more. I've never been very good with words and afraid of writing the wrong the thing. I would like to be able to tell her about my conversation with Mike just 3 weeks ago and how it made me feel hearing him say how happy he was for me and sorry for the loss of my own son and that he is doing so well. I'd also like to think that, like Liam, Mike is also with family in a wonderful place and that I hope Liam and Mike get a chance to meet. Our relationship didn't end well but would like to think that Mike is telling Liam many wonderful stories and maybe even Mike has a few good stories about me that he can tell Liam about his momma.
I just can't believe how bad of a year 2011 has been, and its only just begun. Not sure if I'd prefer to have a time machine to go back in time, to a happier time when I was planning to bring home my little miracle, or even just fast forward a few months. I am really trying to want to be optimistic and hoping the months ahead will be better for me, friends, family, and all the other BLM's.

Saturday, March 12, 2011

I was hoping for a great weekend, getting out and enjoying the fresh air with some friends on a hike. So far this weekend just really sucks. I am still planning on going out with my friends but saddened by the recent news I have received. I had heard yesterday that an ex-boyfriend was in a terrible car accident. Our 3 1/2 year relationship ended over 8 years ago and it did not end well at all, but just over a week ago he calls me out of the blue and we talked for over an hour. He told me how happy he is that I found a great guy like Dereck but it so sorry for the loss of Liam and that even though our relationship didn't work out he really does care about me. He also told me about what he's been doing these days and well it was just a good conversation. Now to hear about this accident he has been in just breaks my heart. From what I've heard he has brain damage and holding on through the means of life support and his mom now has to make the very difficult decision in the next few days to see if he can pull through or to just pull the plug, that is a difficult decision that no one should ever have to make. I wish I could just give his mom a huge hug, too bad I live 3,000 miles away. I know our scenarios are incredibly different but I do know what it feels to have so much love for your child and then have to lose them. I am praying for him and his family and I hope he can pull through.

Friday, March 11, 2011

I have been trying real hard to want to at least find something to want to be happy or positive about these past few days. Yesterday I got a phone call from the Fetal Treatment Center and I talked about all of our medical bills and was informed to not pay any of them right now because they are going to try and fight our appeal again by doing and external review. I know this still doesn't mean we are going to win the appeal but that we at least have another chance at it and so happy they are helping us through this process. Not to mention not having to pay on our bills for awhile is the best news I've heard all week, made my day.

Yesterday I also met with a lady from Providence Hospital to discuss becoming a volunteer. I might be overwhelming myself with all the things I want to do right now but really want to do what I can to help other families and there babies. This interview was for a group called Kuddle Korps in which they need people to come in and hold babies in the NICU. I know people have other obligations like work, other kids, etc, but I don't think I could ever leave my babies side if he was in the NICU. Not sure how this will go for me when half the time I see a baby I start crying or if I see a pregnant person I fill with anger, but hope I can hold it together. I also might help out doing art and crafts with the cancer patients at the Childrens Hospital. I have a few weeks till I start and have to do orientation at the end of the month, so I guess I have time to decide if I think I can or can not handle this.

I also have been debating all week about wanting to post a comment I got at work the other day but wasn't sure I should post it or not, but its Friday and really want to get this off my chest before my weekend starts. I get pretty annoyed by people that complain about work online, especially Facebook-hello, lots of people can read those comments, but this I decided is different. I am not complaining about work as much as I am about the comment that was made to me. This person, who I might add has 5 healthy kids and never had one miscarriage, stillbirth, nothing, asks me what the chances are that this could happen to me again. I was confused at first by what was meant by that, my baby having spina bifida or the fact that his heart just randomly stopped and couldn't be revived. Just as I was going to respond that I am not sure what the chances are, he added that if him and wife wanted to try again he's pretty sure she could pop another one out no problem. Really, did he just say that to me, to the person who just 2 months ago lost her baby. So here I am Friday still pissed about that comment, it makes me just want to quit my job and find another one where no knows that I was ever pregnant or that my baby died. I love my Liam and am so grateful for the time I had with him, but don't need to hear comments like that. GRRR! I wish I could just get that comment out of my head so I can go into my weekend not stressing about that.

Oh look, I just opened a Dove chocolate and the message inside reads, "Feel free to be Yourself". If only it were that simple. The real problem is I'm not sure who I am these days. Hopefully the fresh air and sunshine from skiing and skating this weekend will make me feel somewhat like my old self, it usually does for a short time at least.

Tuesday, March 8, 2011

I feel like I just need to apologize to everyone and to Liam for my posts this past week. I maybe need to apologize to myself more and learn that I need to take it easier on myself these days. I have been complaining so much lately about everything it seems, and does complaining really get anyone anywhere? The bills aren't going away and Liam isn't coming back, so all this is going to amount to is me being more upset about things I have no control over. So easy to say but not as easy to convince myself of.
I don't want to be this angry mad at the world person I am letting myself become. I want Liam to be able to look down at me and be proud of me, and see that I am strong. I just need to get it through my head that I didn't cause this and there was nothing I could do to prevent this. I can't believe its been two months and I still can't 100% say that January 3rd was just his day to die, that surgery had nothing to do with it, and if anything if that was the day his heart was going stop what better place could we have been at.
So from this point on I am going to try and find something to be positive about each day. I somehow keep forgetting that there is still so much in my life I am grateful for- husband, dogs, house, job, great friends, but somehow I manage to let the sad/mad emotions take over every time. I will try to understand that I am going to have some days that are better than others and sometimes its okay to have a good cry in the middle of the day, and know that I don't need to beat myself up because of it.
So I am sorry

Monday, March 7, 2011

Dereck and I spent our weekend staying at B&B with 7 of our friends. This was the first weekend we have really done anything since being back in Alaska. On Saturday we went skiing on the Denali Park Road in Denali National Park. It was a great day, sunny, and clear skies. I had finished skiing before my friends since I am way out of shape now, and started thinking of Liam. I had told Dereck that I thought it would be cool to get everyone to spell Liam's name out with our skies in the snow, but afraid they would give me that, okay weird why would you do that look. When they finished skiing I asked them about doing that and they immediately got there skis out, not sure if they completely understand but glad they were so willing to help.
By the time nightfall came everyone was pretty hungry and wanted to head to this new Brewery near Healy. I wasn't too hungry and at this point my emotions were definitely starting to take over. I wasn't feeling to much like wanting to be sociable anymore, but did my best to have fun. We laughed, played pool and darts, and listened to this guy play guitar and sing for open mic night. One of his songs really hit home with me and I teared up instantly, just wish I knew the name of the song.
By Sunday I was ready to go home, it surprised me much I felt lost without being able to look at my blog or read any of the BLM posts for a few days. We hung out with our friends for a bit in Willow where we stopped by on our way home to watch the Iditarod restart and they could ice fish. I just wanted to be at home, its amazing how much work it is to put on a happy face for a few days and to hold back all of my emotions from barreling out in front of everyone. I mean I had a fun weekend but it seems like I can only handle so much before my mind takes over and I am just mentally incapable of all other thoughts but one's about Liam. Once home I broke down in the shower, and when I went to bed a few hours later had another long cry, mainly just repeating WHY WHY WHY over and over again. I just can't accept that I have no answer and probably never will. I said a long prayer and then spent a little longer talking to Liam before sleep took over.
Today at work has just been crappy. I have been way to emotional today still, and by 10am I already had to have a short cry in the bathroom. I suppose the lack of sleep I have had in the past week isn't helping.

Well here I am many hours later after typing the first portion out and my day has not gotten better. I am so sick of this nightmare that has become my life. Yeah more mail, oh look three more bills. I understand with any surgery or medical care there are bills that follow, I just wish I didn't have to think about them or anything else right now. I guess if Liam were here I wouldn't have cared if I would have had to pay 5 times the amount we have to pay because I would have him here. Its bad enough to already be emotionally and mentally drained and then add financially drained to that list is super depressing. At least physically I am doing better because if I couldn't even get outside for a walk I would really be miserable.
I'm not sure if I had mentioned in any of my posts that I have been looking at going back to school to become a registered nurse. I work in the medical field now taking x-rays but just really think I would be a good nurse. I had already signed up for school and registered for a few classes. I have 6 generals that I would need to take before applying to nursing school, so I wanted to do 2 classes a semester. After some hard thinking in a hot bath tonight I am feeling like maybe I need to either hold off for awhile, or at least take my summer off, and try to make a good attempt at getting my old life back. Plus, I really want to try and get pregnant again, as soon as we can, and if I am stressed out already from everything that's gone on, working and school aren't going to make it any better. I definitely don't want to stress myself out to the point I can't get pregnant or put a lot of added stress on a new pregnancy, but if I don't take these classes then that puts me another year behind on applying for the nursing program and they already have a two year waiting list. I'm starting to think maybe I just need to get another job instead. I guess I just have so many mixed emotions going on right now I don't even know what to do. I wish there was actually a time table that said, at 2 months after your loss you will feel this way and by 6 months you will be back to your old self again. I hate not knowing, there has been enough of that lately.

On a good note I did finally get Liam's story posted, at least up to the point of Dereck and I leaving San Francisco to head back to Minnesota to plan his funeral. I can't believe it took me so long to write, a lot of past emotions being brought up didn't help the process either. I'm sure I'll be adding more to it down the road, I don't want to forget a minute of the time I had with him.

Friday, March 4, 2011

I know I have been posting a lot lately but seriously can I just get a break. Today in the mail now was the letter from my insurance company saying they denied our appeal for covering Liam's surgery. They stated that even though the MOMS study results clearly show that fetal surgery for Myelomeningocele proves that it helps these babies have a better quality of life, but since we had the surgery 5 weeks before the study results were published its not acceptable. GRRR! Its bad enough I lost my baby leaving an enormous hole in my heart, have a huge scar from my c-section incision, and now have massive medical bills to pay off since that got denied.
I hope this weekend goes better than the last few days have been, at least Derecks home now

I had started a baby registry rather early in my pregnancy with Liam, I think around 4 months along, even before I knew I was having a boy. I created one early because I had just boughten a plane ticket to go home and spend Christmas with my family and figured while I am home it'd be nice to have a baby shower with everyone. I had hoped to also have one with my Alaskan friends as time drew closer to his birth. I had a wide range of items on my registry, but made sure to tell everyone invited that smaller items are preferred that'll fit in my suitcase since I'd have to haul it all back to Alaska. At the baby shower Liam got tons of clothes, books, and other baby essentials, but many people gave gift cards since those would be easier to pack home. So what do I do now. Very few items were actually purchased on the registry and I loved everything I had picked out for him. I am sure this has happened to others that they had a registry that barely or never got used, but what do you do with it. The reason this came about right now is that I got an email saying that some of the items in my registry are no longer available and then I got a letter in the mail saying that if I would like to buy out the rest of my registry they will take 10% off the entire purchase. I wish I could buy out the registry, I love all of the items I picked out for my little man. I guess what I am wondering about is if I need to call and get the registry cancelled, because I couldn't find a delete registry button on my registry page to do it myself and really I don't want to be the one to delete it, deleting is so final. Will the registry just disappear on its own after a certain amount of time or does it just stay available forever and maybe if I get pregnant again it will still be there waiting to get used. I am just tired of getting coupons and emails for baby stuff since I created a registry don't but don't want to have to call and explain to a worker to delete my registry and stop mailing me things because my baby died.

Wednesday, March 2, 2011

Today just hasn't been to good for me. I have still been pondering the whole autopsy thing ever since the Perinatologist called. Still just don't know exactly how I feel about it and since I was at work I didn't have time to ask any questions or really talk about much else. So many questions I want to ask. He said he will call me back tomorrow and we can talk more on how I am doing. Wish I knew what time he was going to call, I am so anxious, I want to talk now. What if he calls while I am in my eye Dr. appt. tomorrow? Is it okay to just walk out of a Dr. appt., because I think I would do that, I need this call? I don't expect to hear anything different than what he told me earlier today or get any different answers to the questions that were asked when I was in the hospital there, or even different answers than what my Ob Dr. told me just the other week when I was in. In a strange way I just feel like I need to talk to him, maybe its because he was the one watching over mine and Liam's care when we were in surgery, or maybe its because its just a way for me to somehow still be connected to UCSF and to San Francisco.

I also found myself wondering aimlessly around the baby section of Burlington's Baby Depot tonight. I had went there because I had found out that they carry the nursery set that I had picked out for Liam's room and wanted to see if they had the few pieces I was missing for the set. Why do I put myself through this, I don't know. They didn't have the missing pieces but of course I have to look at all the nursery collections, cribs, strollers, swings, etc. I also started looking at baby picture frames, such beautiful sayings on them all. So here I am staring at these frames and tearing up as a worker asks how I'm doing and if I need any help. I look up feeling kind of silly and all emotional and say I'm fine and just walk past her and out of the store. Why did I even go there, really, why? You'd think I like to torture myself with seeing tons of baby stuff and even babies. After I left there I decided it was about time I got my cousin at least a card congratulating her on her new baby girl. That was as bad as me looking at those baby frames at Burlington. Such sweet sayings on the cards, I even started reading the ones for boys. Geez, this is the second store in a row now that I have left teary eyed.

I have also been saying how work has been going fairly well. As long as I just do my job and stay away from any baby/kid related talks I do alright. I can even check out a blog at work in my spare time and manage not to get all emotional. Why is then that I can go a whole day at work and hold my tears and emotions back so well to everyone that I can appear like I am doing great. I am starting to see this trend that every time I leave work I just barely make it to my car and the tears just start coming. Its like my body just knows it needs to be strong and just make it through work, but the minute I leave its okay to let that built up sadness come pouring out.

Don't exactly know what my deal with today is. Maybe a combination of everything that went on or maybe its knowing that tomorrow marks exactly two months. I guess we will see what tomorrow brings.

I have been waiting patiently for the past 7 weeks for the day that Liam's autopsy results were ready. It figures that when I finally get the call I am at work and can't talk long. In the short time I did have to talk to our Perinatologist he told me that the autopsy didn't show anything other than that there was excess blood in the liver. He said this doesn't raise any concern though since this tends to happen a lot when there has been aggressive CPR done. I guess I knew from the start that there was only a small chance of anything significant even being found. Before the autopsy we were even told that nothing is found in about 60% of cases. For the past several weeks I just kept praying I would get an answer. Not that I wanted to blame someone or even myself for his death but at least I would have an answer.

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Evelynn- My Baby Girl 4/22/2012 - 4/24/2012

About Me

My husband and I got married on 10/18/2008. After trying for about 2 years we were finally pregnant with a baby boy. At 20 weeks gestation he was diagnosed with a severe case of Spina Bifida, Unfortunately after having fetal surgery on 1/03/11, at 26 weeks gestation, our son Liam passed away.
Then, my beloved rainbow baby Evelynn was born on 4/22/2012 at 36 weeks and 2 days, just 6 days before my scheduled c-section date. My uterus had ruptured leaving her brain dead. She died a day and a half later. I am forever heartbroken to have lost not one, but now two, of my beautiful babies.
Luckily, we were able to find an amazing gestational carrier to help us bring home a healthy baby. Our son Maximilian was born on 9/26/2013. We can't thank Jessica enough for doing this for us.
Then, after learning I have diminished ovarian reserve and learning that using another carrier with my eggs is not a favorable option, we decided to adopt and signed on with an adoption agency at the beginning of 2015. Our birthmom picked our profile a few months later and on August 3, 2015 Ruby Evelynn was born.